Evan's Journey

2012-03-02T05:14:00.003-08:00

2012-02-21T11:59:00.000-08:00

Sunday we got 9inch of snow and the kids had so much. Evan loved it, this was his first time playing in the snow and he did everything his sisters did. It was about 6:00 and they was wanting to go back out. I said just for few minutes because it will be dark. So they had so much fun they didn't wont to come in. That night i new Evan would sleep good. Evan feel asleep on the couch around 8:00 so i put him to bed and then i stayed up until 12:00. So i went to bed and just fell asleep Evan woke me up vomiting. I said oh no. So i got the bed clean up and got him back to sleep and he did it again. So finally around 3:00 we got to sleep. When he got up he was fine. He was wanting to go back outside and play in the snow. So i told him no maybe later. So around 1:00 we went back out, he played for little bit, but you could tell he wasn't up to it. He said mommy i wont to go in. We went in he got his cup and went to sleep and sleep for 3 hours. He still wasn't feeling that good.

We didn't make to his appointment either because of the weather and he was sick. We go back to get his catheter changed out on Monday. He catheter is really hurting him now.

2012-02-19T06:00:00.000-08:00

I took the kids to the trains station. Evan loves going there. The weather was so nice. We seen so many trains. The kids rode the train couple of times.

Evan has been doing good. We go back to UVA tomorrow, if we don't get all of this snow we are suppose to get. Evan will get his new catheter and his blood check again. His HMG is getting low so he might need blood transfusion.

Evan is using the potty now. So no more diapers for him. He is doing a good job using the potty. His diaper area is looking some what better.

2012-02-14T10:50:00.000-08:00

Happy Valentine's day.

Evan had a Valentine's times party at school today. I was so glade i got to go and see all the other kids. Evan was so happy that his mommy was at school with him today.

2012-02-08T08:02:00.000-08:00

2012-02-08T07:41:00.000-08:00

This is what Evan plays with everyday. He loves his monster trucks.

2012-02-03T13:07:00.000-08:00

Evan getting ready to go into the OR.

Evan did good today. He did get his new catheter. They call me to come and see him in the recovery room, so i got up there and he was sleeping. So i got his clothes so i could put it on him while he was a sleep, like i always do. When i was doing it he woke up and he wasn't right. So i just picked him up to hold him, and i told the nurse i said something is wrong. So we waited for a few and then she said I'm calling the doctors. Evan couldn't pee, i was scared. So finally the doctors came in, and they had to pull his catheter out some. OMG that hurt Evan so bad. His catheter was in to far and he couldn't pee. Then he was filling better i was so glade.

Evans blood is still low. They didn't give him no blood they are going to do it when we go back up there on the 20. I wish we could get his blood back up i think he would feel so much better.

I just wont to think everyone for there prayers and keep them coming. We need a cure for EB.

2012-02-01T05:12:00.000-08:00

This is Evan's favorite truck

Evan got to go to the monster trucks. He was so happy, and we had so much fun. His eye was doing better so we went. All i can say is god is great, i prayed and prayed for his eye to heal by Saturday and it did.

My 3 babys.

Evan goes Friday and he has to get new Catheter and get iron infusion done. It is time for new tube he is hurting with this one. He does good the first two weeks then after that he is hurting. I wish he didn't have the catheter.

The last couple of weeks now he has been choking alot. I don't no what that is all about. I no he scares me when he does it. I took him to the doctor they said it was acid reflux. He is on medicine for that. So i called Cincinnati and they wont to check his airway in March, They think it might be his airway. I hope not. Evan cant play hard no more because he has hard time breathing, His breathing gets really hard. I just hope his airway is going to be okay, i don't wont no trach.

2012-01-26T07:17:00.000-08:00

Evan has had corneal abrasion now for 8 days. He has been in so much pain with it. I hate them. This is the worse part of his EB. I had to take him back to the eye doctor again today, they said if no better by tomorrow they might put a contact lens in. I don't no if i wont to do that.

Evan goes back to the OR next Friday to get new catheter in. Then we start going every two weeks and he will get new catheter, he will be awake. I hope he can do it awake and its not to bad on him

Evan didn't get to go to school this week because of his eye. This week has been so stressful. Evan wont's me and only me i couldn't do nothing. Then when the girls got home from school they got mad because i couldn't do much for them. I try to tell them that Evan is scared and in alot of pain when his eyes are like this. So they understand but they wont there mommy to. I just feel so bad sometimes i just don't no what to do. Sometimes i wish i had some help, but i guess it wouldn't do no good. Because he wont's his mommy and so does the girls.

Saturday we are going to the monster trucks. Evan loves the monster trucks. I just hope his eye is better. The kids are so happy to go, and i hope we have so much fun. I can't wait to spend the day with my baby's. Evan's grandparents are going to so we will have so much.

2012-01-16T05:52:00.000-08:00

Tripp had junctional Epidermolysis Bullosa. The same kind as Evan. Tripp got his wings and now he is pain frees. He has touched my heart, his mommy was the best mommy she did everything she could for her son. Now he is with Jesus an pain free and playing his drums and watch over his mommy now. We need a cure for EB.

2012-01-11T17:04:00.000-08:00

Evan had to get another catheter put in yesterday. When they go in and take the old catheter out it is getting stuck to his skin and its tearing his skin. So we are going to try and see if we go and change his catheter out every two weeks. But we are going to have to do it while he is awake. We are going to do it in the OR and if he cant take they can put him to sleep. I hate this catheter he still hurts and still has hard time peeing. I just wish he could pee right. I hate to see him in so much pain.
His skin is looking really good. His noise is healing now if i can get his eye lids to heal his face would look great.
He is still going to school and he is doing so good with it. He don't cry when i leave him now. So that makes me feel so much better. He talks about school now, and he talks about his favorite teacher. He has to make sure she is there before i leave him.

2011-12-28T16:30:00.000-08:00

My 3 baby's on Christmas eve.

We had good Christmas. Christmas day we took it easy we stayed home most of the day and the kids played with there new toys. He got train table and he loves it.

2011-12-22T17:58:00.000-08:00

Santa came to our house today.

2011-12-14T14:22:00.000-08:00

Christmas 2011

2011-12-08T04:58:00.000-08:00

Evan had his surgery he did good. The urology doctor is going to change out Evan's catheter every 3 weeks now. Because he just cant make it to the 4 week. The ENT doctor check his vocal cords and everything is still the same looks okay. His noise got clean up they silver nitrate it and it looks really good. I just wish it would heal. They did a biopsy on his tongue to see what it was. we will no something in couple days. I just hope its nothing.
We went and say the eye doctor to and his right eye lid is missing alot of skin. He is worried about his eye. I have to keep his eye good and moist all the time. IF not he said he could lose his eye sight and we don't wont that. He said that we will have to do some skin grafts if no better soon. so i wont that now why wait. So any way we go back there in 6 months and if no better he will do some skin grafts on his eye lids. It will help for awhile. The only thing that will help it heal all the way is a cure for EB.
We go back to Cincinnati to the EB doctors in March. When we go up there i hope they will do it while we are up there. But i no they wont. But I'm going to see what i can do about that. I cant wait to go back up there and see all the doctors. I just wont to thank everyone for all the prayers for my son.

2011-12-01T15:04:00.000-08:00

Evan loves the train under the tree.

We had good Thanksgiving with the family. We went to my grandma's house. The weather was nice so the kids played outside. Evan was feeling good so that was good.

While the kids was home we decorate the Christmas tree. They did it all, and they did a good job. I didn't put everything out this year like i did last year.

Evan has been doing pretty good, he has had cold for awhile and bad cough. So i think I'm going to keep him out of school until the first of the year. To see if that helps. I hate to do it, but i don't wont him to stay sick either.

Evan is having surgery again next Tuesday. He is getting new catheter and then the ENT doctor is going to clean his noise and look in his airway. Evan also has something growing on his tongue so they are going to look at it to. I hope its nothing and everything will turn out okay. So if you read this please pray for good news.

2011-11-11T04:26:00.000-08:00

I had to take Evan to UVA yesterday to see ENT doctor. Evan's noise is getting bad it's not healing and his noise is closing up. He has something on his tongue that is growing. So when Evan goes to the OR in December for his tube change, the ENT doctor is going to look at his tongue and silver nitrate his noise again. They wont to look at his air way but i don't think I'm going to let them. They aren't going all the way down just to his vocal cords, but its still to dangerous. I just wont to no what's on his tongue is. Maybe that's why he don't wont to eat. Evan doesn't eat nothing at all, he does drink. So everyone please keep Evan in your prayers.

2011-11-08T17:16:00.000-08:00

Evan school picture. She did a good job on it she touched it up for me. You cant see his boo boos on hear. He looks so big, my little man is growing up on me. Evan mommy loves you so much.

2011-11-02T15:17:00.000-07:00

My three baby's. We had a good Halloween.
The girls went trick or treat they had a good time. Evan didn't wont to go, he stayed with his granny and his paw paw. He help hand out candy.

Evan had surgery on Tuesday he had to get new catheter. He did good.

2011-10-30T11:22:00.000-07:00

We got some snow this weekend. So the kids played out in the little bit of snow we had.

Evan is having hard time with his catheter right now. He is having surgery on Tuesday to get new catheter. I hope it stay open until then. Last night at bath time he screamed he didn't wont to take bath. He said mommy no please mommy no don't flush my tube, don't wash me, it hurts me so bad. That just breaks my heart. My little man has to deal with this everyday.

2011-10-28T05:33:00.001-07:00

Chy Evan Hannah

Me and the kids carved pumpkins last night. Evan didn't like the stuff inside of it. So me and the girls cleaned and carved the pumpkins. When we was done Evan love the pumpkins.

Evan has been doing okay. He is having surgery on Tuesday he is getting new catheter again. I hope it makes it until Tuesday. He is having hard time with it right now its getting clogged up and he has UTI.

EB awareness is this week and we need a cure for EB.

This is why we need a cure. I have to watch my son cry to pee, or i have to watch him scream when he has bowl movement. I just hate it. Or when i take his diaper off it is stuck and i tear is skin. Or when i take his bandages off they are stuck and i tear his skin again. Or when i put him in the bath all he does is scream. There is so much that he deals with he stay in pain all day long. Its not far. I pray everyday for a cure for EB.

2011-10-25T06:10:00.000-07:00

EB AWARENESS is this week.

We need a cure for EB.

These kids dont need to be in pain all the time.

Go to DEBRA.ORG

to learn more about EB.

Evans foot.

Evan eyes they wont close no more.

Evan blister on his foot.

2011-10-16T06:50:00.000-07:00

We are waiting to hear back from Make A Wish Foundation. They came and interview us last week. Evan wish is to meet Denis Anderson he drive Grave Digger and he wont to ride in Grave Digger truck. Then he wont the power wheel Grave Digger. I just cant believe we got interview with them. He love Monster Trucks. That's all he plays with, he plays with is trains to.

Evan has been sick on and off for the last month now. I think I'm going to take him out of school i hate to do that because he likes school. He don't like me leaving but after i walk out of the room he is fine. They say he does so good. He talks to them and he does what everyone else does. School makes him so tired, when he gets home he lays around the rest of the day. I don't no what he will do when he starts school all day long.

Tomorrow he goes to the pumpkin patch with his school. We are going to have so much fun. He will love it. But he will be so tired when we get home.

2011-10-16T06:04:00.000-07:00

I took the kids to the pumpkin patch last weekend, Evan didn't go because he wasn't feeling good. He is going Monday with his school. The girls had so much fun the weather was nice. I wish Evan was with us. I hate when he cant go.

Hannah

Chyanne

Lucas Chyanne Hannah

2011-10-05T05:12:00.000-07:00

Evan has his surgery yesterday. It take us two hours to get there and he cant have nothing to drink and he did great. When we got to the hospital he was okay until they called us back to the room. He was mad and he was a hand full. The doctor came in and he said we will get him back in the OR now. And they did, i couldn't believe it. So i carried him back to the OR, i was holding him while they put the mask on his face. We got him on the table, i kissed him and told him i love him. So i went back out to the waiting room and got me something to eat. Wait for the doctor to come out and tell me what he did.
So the doctor came out and said Evan did fine, he clean out his bladder, put his new catheter in. He said i can come back in few they was putting his dressing back on. So i waited for them to call me back. So finally i got back there and he had some oxygen on him so i started freaking out. They said he is okay. But his airway didn't wont to stay open in the OR. So they had to give him some oxygen. So finally he woke up and he told me, I'm a wake and i got my new tube. Man i love that boy. He is so strong.
So we came home and he laid down for awhile. I asked him if he wont's to go out on the porch and get some sunlight. The weather was nice it was cool and the sun felt so goo. That even got him ready for bath and he was in some pain. After the bath he was still hurting. His bladder was hurting him so bad. I put him to bed and he went back to sleep. I'm not sure why his bladder is hurting him so bad.

2011-10-03T05:40:00.000-07:00

Evan is having surgery in the morning. He has to get another catheter put in. I wish Evan could pee right so he wouldn't have to have all these surgery. I hate to put him to sleep. Evan diaper area is still really bad. He has yeast like i have never seen before. He is itching so much now i don't no what to do. His foot is getting better. He can walk and play now. The weather is getting cooler now, so hopefuly we can go outside and play.

2011-10-03T05:30:00.000-07:00

Please read Tripp blog. He has Junctional EB like Evan. Tripp can't see no more. His EB took his eye sight. He is two year old boy that cant see and he cant go out side and play. His mommy is a wonderful mom. She is with him all day everyday. We need a cure for EB.

2011-09-30T05:30:00.000-07:00

Evan walking into school

He is washing his hands before he goes into the class room

His 2nd day of school

he loves it

3rd day of school. It was Teddy bear day.

Evan and his doggy. Love the smile

Evan really likes school. He goes two days a week, 3 hours day. Getting Evan there and me leaving him is still hard he does cry. I stay out in the hall way to make sure he is going to be okay. The teachers come out and says he is just fine. When i go pick him up he is so happy and he tells me he loves it and he had so much fun. I'm still scared to send him its flu time. But if there is alot of kids out sick we wont send him that week. He likes school so i think he should go and have fun. He needs to have fun.

2011-09-30T04:53:00.000-07:00

This is Evans foot.

I had to take Evan back to the doctor yesterday. He had fever 100.6 his foot looked really bad. When i took his shoes and sock off he had the big blister on his foot, I felt so bad.So i new he had infection. He also has bad cough. So he on some antibiotic and breathing treatments. It's getting cold and Evan will love it.

2011-09-19T13:21:00.000-07:00

Evan had to get his blood check again. So Friday we wen to the health department and got his Hemoglobin check and it was 6.5. So we called Roanoke to see if they could give him some blood. They said he could come up Saturday and they will start it. So we went up there Saturday to give him his blood. We didn't get home until 1:00 Saturday night.

Evan got his blood and he is feeling so much better. He does have cold now. So i hope he feels better soon.

2011-09-12T11:25:00.000-07:00

2011-09-12T11:09:00.000-07:00

HAPPY BIRTHDAY EVAN

My little man turn 3 Sunday. I can't believe Evan is 3 already. It has been long 3 year. Evan had big birthday, he had monster truck birthday party.

2011-09-05T12:46:00.000-07:00

I hope everyone had good Labor Day.

Chyanne and Hannah getting ready for the parade.

Evan at the parade.

2011-08-25T05:10:00.000-07:00

Evan is having hard time with his catheter again. I had to take him to UVA to see the Urology they tryed to get his catheter open and it wouldn't. So we had to get him in the OR. He had to get a new catheter. So they told us that they couldn't get him into the OR until 4:45 i said OMG. So we went to the mall to kill sometime. He got tired of that so we went back to the hospital. The weather wasn't to hot so we set outside for a little while. I heard the loud noise then everything started to vibrate didn't no what it was. Some people was coming out of the building and said it was Earthquake. So come to fine out it was Earthquake.
Then the time finally came and they call us to come back to get Evan ready to go to the OR the time was 5:00. Did i tell you i was really mad, oh yes i was hot. Evan was hungry he was cry for his cup. I told them they need to get moving. So finally at 6:30 we went back to the OR. Evan got his new catheter. He did good.
We finally got to come home we didn't get home until 10:00 that night. Evan was so tired. There is something still wrong. He is still hurting. So we go back to Cincinnati i hope they can do something. I hate to see him hurting so bad.

2011-08-17T06:32:00.001-07:00

West Va. Fair.

2011-08-17T05:42:00.000-07:00

Evan before surgery.

Evan had to go to UVA and get his new catheter. Evan wasn't happy at all when we got there. The gave him some medicine to clam him down. And it worked. Then they came and we had to go back to the OR. So we went back there i held him until he went out. So i went to the waiting room to wait for him to get done. The doctor came out and talk to me, he said that Evans catheter was stuck they had hard time getting it out. He said that Evan will have some blood in his bag when i go back there. I said okay.

So finally they called me to come back there now, they said hear up because he is mad and wont's his mommy. I heard him cry so i went running to get him. They hand me him and we rock to see if it would claim him down and it didn't. Then he pulled out his IV. They said we need to get him clam down he is going to tear his skin up. I said yes he is. So finally i got his cup but his pedisure in there and he was started to clam down. I was so glad, he scared me. we stayed there for a little while longer, to make sure he was going to be okay.

We got home and he was so happy he played with his sister for awhile. Then he got tired so he went to sleep. When he woke up he was okay. When it was bed time he was in a lot of pain. I don't no what was going on with him. He said my tube hurts. So he cry out and wouldn't stop cry. Finally he went to sleep.

2011-08-11T10:59:00.000-07:00

2011-08-10T19:32:00.001-07:00

Evan has been doing pretty good. He hasn't been sleeping that good. But he keeps on grabbing his penis and telling me it hurts. So i new he was getting another UTI. His pee started to get dark so i took him to the doctor so they can check it and he has nother UTI. I just don't understand why he keeps on getting one. So that is making him feel little bad, but he is doing OK.

He hasn't been able to play outside because it has been to hot. Today was little cooler so i took him and the girls to the fair. My cousin was going so we met us up there. Evan had so much fun. He loves the rides. We had alot of people looking at him and talking. But i just went on and didn't look or say nothing. I know my little man looks different but he is the cutest thing ever.

We are getting all of his doctor appointments together for next month in Cincinnati. He is going to see all kinds of doctors, we have 3 days of doctors. I wont Evans eyes to heal up some they are looking so bad. And at night time he cant close the left one no more. I'm hoping they can do something.

2011-08-06T12:29:00.000-07:00

2011-08-06T12:26:00.000-07:00

Evan looking at his book while i do his bandages.

2011-07-31T14:20:00.000-07:00

Evan waiting for the monster trucks.

My 2 girls.

Hannah and Evan

Chy and Evan

Me and my kids.

2011-07-31T14:09:00.000-07:00

Evan, Chy, Hannah at the monster trucks.

Evan has been doing good. I took him and my girls to the Monster Truck this weekend. He loved it. He loves the monster trucks, he has almost all of them.

He is getting lot of blister on him. His arms are looking so much better now. His diaper area is getting better to. His eyes are still hurting him lot. The new medicine isn't helping his eyes. I was hoping his eyes would heal up. He tells me now that his feet hurts. I don't no why his feet are hurting, they look fine.

2011-07-23T07:33:00.000-07:00

We was in Cinicnnati.

Evan got a new train. He loves train.

He was playing in the water.

2011-07-22T11:34:00.000-07:00

We need to pray for Tripp. He has Junctional EB just like Evan. Tripp is in alot of pain and he if fighting a infection. He needs our prayers. His is strong little boy, his mother is strong to.

2011-07-21T08:50:00.000-07:00

2011-07-21T08:19:00.000-07:00

We home from Cincinnati. The eye doctor took some pictures of Evans eyes, to send to another doctor. She told me to use the ointment 4 times a day on his eyes, and use the other ointment at night. So he has to different ointments for his eyes. I hope it helps. We go back in September to see if his eye are any better.

Evan had ultrasound done on his kidneys and his bladder. After the doctors read it, we had to talk to the doctor.
Evans kidneys are good. So that was good news. His bladder had some bacteria in it. So that's no good. But the doctors told me as long as he don't get a high fever or get really sick he will be okay. I asked them what else can we do. He still hurts to pee, his bladder it tearing and getting clogged up in his catheter. He said nothing else he can do. He said if it was he would do it. He said we need a cure for EB. EB is doing it to him. His bladder is just like his skin it tears and then it heals. He said he can't get bigger tube because it will hurt him more. He has 16inch catheter in now and he said that is big for him. I asked him, what is going to happen if he leaves this catheter in for a long time. The doctor hear at home said its not good to have Supapubic Catheter in for a long time. The doctor told me he will be okay for now. But the risk is that he can get cancer in his bladder. You no me i didn't like to hear that. But this is the only thing we can do, he has to pee. Evan has to get a ultrasound done every 3 months to check his bladder and his kidneys. We will be going back in September to see the Urology and get another ultrasound done.

2011-07-15T06:41:00.000-07:00

July 11 Evan had to get another catheter put in. He is having hard time with the catheter. It is getting clogged up all the time now or he is keeping UTI. His eyes have been bad to. He hasn't been able to open them all week.

Next week are going to Cincinnati to see and eye doctor. Evan has to have some test done to. We have a meeting with the urology to, talk about what the next step is going to be.

Evan is so sore if you touch him he hurts. He is getting all kinds of new blisters. His arms still blistering up. If i wrap them they get more blister so i don't wrap his arms. His feet hurt to he don't wont to wear shoes no more.

He has been laying around alot. He does get up and play with his sister for awhile then he will lay back down. Its so hard on him he wont's to do what his sisters do.

I love summer but I'm ready for fall. Evan wont's to go outside, but it has been to HOT. So we have been staying in alot.

2011-07-04T12:57:00.000-07:00

HAPPY 4TH OF JULY

Today is Chyanne birthday she is 10. I just don't no where the time goes.

Evan is still having hard time with his catheter. We go back to Cincinnati in couple weeks, to talk with the doctor to see what the next step will be. I don't no what they can do, but i hope they can do something so he can pee with out pain. I hate to see him in pain and he cant pee. Evan arms are looking bad. He has never had problems with his arms until now. His eyes are still hurting him to.

The heat is bad i wish it would cool down some. He wont's to go outside so bad and it's just to hot. I hate to tell him no. So he stands out the window and watches his sister out there playing. That just breaks my heart.

2011-06-23T08:49:00.000-07:00

Evan catheter got clogged up again yesterday. I had to take him to UVA. They changed out his catheter while he was awake and it was bad. He was in so much pain when they did it. But he did good. He is a strong boy. I hope he can keep this one in for awhile. I don't know what they are going to do, he can keep this up. Today he is sore. He hurts when he pees. So i don't no if he has infection or not. So I'm going to take his pee to the doctor so they can check it.

2011-06-21T14:08:00.000-07:00

2011-06-21T13:55:00.000-07:00

Beach trip

2011-06-18T17:55:00.000-07:00

We are home from the beach and I'm so glade. Evan had bad week. We got there Saturday around 3:00 and he didn't feel good. I new there was something wrong. His peeing wasn't right he didn't have that much pee in his bag. that night he got worse. Sunday he was in a lot of pain. He couldn't pee at all. So i kept on flushing his catheter out and praying that it would help. It didn't we had to fine a hospital. I new i didn't wont to go to the hospital because they wouldn't know about Evan's EB. So we went and they was nice, they had to transport us to a children's hospital. So i got scared again, new doctor. We went to Kings Daughters hospital, they where so nice to. They gave him morphine to help him with the pain until they could get him in the OR. The urology doctor came up and talk to us, he said we will get him in now. So they got everything ready, that time Evan was in so much pain, i felt so bad useful. I couldn't help my baby and he had to pee. They got him in the OR. Then he went into the recovery he was out. He wouldn't wake up at all. We went back to the hotel and Evan slept all day. The next day he was a different child, I was so glade.
Wednesday I took Evan out on the beach. He was out there hour or two. I took him in gave him a bath. He told me he didn't feel good. He got up on the couch and went to sleep. When he got up he told me he didn't feel good again. He felt hot. So i try to get him to eat he didn't wont nothing. So that night he got sick. The next morning he was fine. So i don't no what was wrong with him.

The week way from home was bad. Evan was so home sick. I will never go on vacation again. Evan loves to be at home so that's where we will be for now on.
My girls had so much fun they love the beach. They was ready to come home to.
We got home to day and Evan was so happy. He played with his trucks and he played. He is feeling better. He still has low grade fever. So i will have to watch that.

2011-06-10T11:22:00.000-07:00

The heat is bad. Evan skin is so bad right now, and its from the heat. He has been inside now for two days. Its so hard to keep him in when he sees his sister out there playing. It sucks. I hate to tell him no that he cant go outside, that is his favorite place to be.

The doctor has Evan on Cipro for his UTI, and his skin infection. His ankles are still hurting him so bad.

We are leaving in the morning to go to the beach for a week. I hope Evan likes it. I'm going to put him in the ocean and i hope the salt water helps his sores. I'm going to take him down early in the morning, so the heat wont be so bad on him. My girls are so happy they cant wait. We haven't been no where in years.

Evan still not eating like he should. But he is still drink his pedisure.

2011-05-31T04:54:00.000-07:00

Evan had his surgery he did good. He got his new Catheter and some iron. His skin is looking really bad. His bottom is really bad. It hasn't looked this bad in long time. His legs are bad and his arms are getting bad. Evan arms always did good until now. so i don't no whats going on. I think it the pain that he is in. He hurts so bad when he has bowl movement and his catheter keeps on getting clogged up. I wish he could pop with out pain. When he has bowl movement it is bad. He will put his head on the floor and say mommy why, mommy why. That just breaks my heart.
Every time i touch him i hurt him now. I cant pick him up if I do he will scream. It's so sad to see you child in so much pain and cant do nothing about it.
He wont eat now. Every time he eats he gets choked. So they told me as long as he is drinking his PediaSure he will be okay.
My girls are in school and Evan is still in bed so i got on the computer to blog and check my emails. Every time i get on my computer Evan tells me to get off and play. LOL.
We are going on vacation for a week in June i cant wait. Its going to be me and my kids and some of my family. I hope Evan will do okay. This is his first vacation. We go to Cincinnati alot but that's no vacation to him. I need to start packing so i don't forget nothing.

I cant wait untill saturday it the Poker Run for Evan. The money is going to Debra for a cure.

2011-05-24T17:53:00.000-07:00

Evan is having surgery tomorrow. He is getting his catheter change out, after that he getting iron infusion. Evan is doing okay. He is staying tired alot. His catheter is hurting him really bad. His skin is looking bad. I'm glade its summer but its tearing Evan up. He loves it out side and the heat isn't good for him.

We are haivng a poker run for Evan. The money is going to go to Debra for CURE for EB.

I dont have time to blog right now. Everytime i get on the computer i have to get up and get something for the kids.

2011-05-12T12:44:00.000-07:00

I had a good Mother's Day. Me and the kids played and just had fun. I hope all of the other Mommy's out there had a good day.

Evan is doing okay. He has bad sore on his ankle i cant get it to heal. I took him to the doctor and his doctor did a culture on it. so now i have to wait and see what it says. The doctor put him on antibiotics so the infection will go away. I'm still injecting his Gentamicin into his catheter everyday. He still hates it. He is getting some sores on his tongue. He is gaining weight really good. He is up to 30 pounds now. I'm so happy.

2011-04-29T15:39:00.000-07:00

2011-04-29T15:26:00.000-07:00

2011-04-29T15:10:00.000-07:00

Evan still has UTI. I have to give him Gentamcin and put it into his Catheter twice daily. This is no fun at all. I have to do this for awhile now. He hasn't been feeling good. He has been laying around alot and playing with his trucks. His Catheter really hurts him to, his bowls still are hurting him to. He stays really tired. The doctors in Cincinnati called me the other day and told me when we come back up there he has to have another blood transfusion. His blood is still low. I guess that's one of his problems to. They said he might have to have it done every month to get it back up.
He is having alot of new blister coming on him. I guess it the weather doing it. This summer is going to be bad. He loves it outside and he wont be able to play. He will have to watch his sister out there.

2011-04-21T04:13:00.000-07:00

Evan had surgery last Wednesday it went good. They changed out his catheter, Then Dentist said his teeth look okay. We don't no why his teeth are hurting him. His adult teeth are starting to come in, so maybe that's what he feels. Evan's eyes are doing okay, but they are worried about them. He cant close his eyes and because of that it is making his eye dry. If his eyes are dry they will scare. So the eye doctor going to talk to another eye doctor. Its so hard for me to get eye drops in his eye, with his eye lids all ready have sores on them i cant touch it. At night time i do lubricate his eye really good. I don't wont him to have problems with his eyes. He don't need that right now. They did check Evan's iron and it was still low. So they had to do another iron infusion. They will check his iron again in a couple months, to see if he need another one.

Evan is getting alot of blisters. His legs are getting bad, and he is getting some blister on his hands. I don't no why he is getting on his hands. I don't like that.

Yesterday i had to take Evan to the doctor. When we got home from Cincinnati last Thursday Evan was fine. But that Saturday he wasn't. He was in alot of pain, and Sunday he was in pain. So it kept on. So finally i called the doctor told them i was bring Evan in. They check him over everything looked good. So they check his urine and he has UTI. They are going to send his Urine to the lad to do more test on it. I new there was something wrong. I wish he could pee right, but maybe one day.

2011-04-11T12:32:00.000-07:00

It's in the 80's to day and its to hot for Evan to be outside. Its going to be long summer, but I'm ready for summer. Evan has a little cold right now. I hope it don't get no worse, or he wont have his surgery Wednesday. He is having surgery Wednesday at 12:15. His teeth is really hurting him now, so i hope they take the rest of them out. If they take these out he wont have no teeth at all, but i know he will feel so much pain. Evan has to get his catheter change out to, i just wish he would pee out of his little boy part so he wont have his catheter no more. The catheter hurts him so bad sometimes. But he can pee with out pain now. So just say prayer for Evan on Wednesday. PLEASE.

2011-04-06T05:33:00.000-07:00

It was so nice outside Monday Evan got to play outside. He loved it he played out there all day long. He loves riding his power wheel Jeep. He was the best little man Monday. He was in some pain but he still played out there like nothing was wrong. His Catheter is really hurting him right now, He is getting it change out on the 13. I have to go.

2011-03-30T13:27:00.000-07:00

2011-03-30T12:22:00.000-07:00

This is what Evan does all the time. He love his trucks.

2011-03-30T09:40:00.000-07:00

Evan is still having problems with his bowls. All of his test came back okay. When we go back to Cincinnati April the GI doctor there is going to look and see whats going on. I hope its nothing. He is peeing good now. When we go back to Cincinnati in April Evan is getting lot done to him. They are going to check his eye, dental is going to go and look at his caps to make sure they are doing okay and he will get a cleaning done, they going to change out his catheter and the GI doctor is going to see why he hurting to have a bowl movement. His hip is getting really bad again. I cant get it to heal again. They was healing up really good. Evan is doing really good he up playing and we have been able to go outside and play. Let me tell you he loves it out there. This week it has been cold and nasty so we haven't been out much. I hope this summer it don't get to hot.

2011-03-19T07:14:00.000-07:00

Evan is having hard time with his bowls. We are checking his stools to make sure he don't have no infection. He is hurting when he has bowls movement, he has a lot of gas to. He has a bowl movement 3-4 times a day, and its not hard either. So i don't whats going on.
Evans tube is still hurting him, but not as bad as it was. So thank god for that. He is peeing good. I think the medicine has helped out with that.
Evan eyes are still hurting him a lot. I got him some sunglasses to wear, and he wears them. But now he is getting blister behind his ears for the sunglasses.
Yesterday was so nice outside. So we played out there all day long. He had so much fun. I'm so ready for summer. But Evans body isn't. He is getting so many new blisters now, and i no its because the weather is getting warmer. He is getting hotter. Evan is getting blister from his bandages now. But he has to be wrapped up or we will have bigger problems. So i don't no what to do about that. I wont him to go outside now before it gets to hot and he cant. He loves it outside.
We go back to Cincninnati April 13 to change out his tube and get his eyes looked at.

2011-03-05T10:43:00.000-08:00

We went to Cincinnati Wed and Thursday he saw the EB team. The doctors said that Evan looks so good. His weight is good. They are worried about his eye lids his right one is getting really bad, he cant shut his eye all the way now. We talk about his bladder problems and there is nothing they can do. The EB is just in his bladder that's why the lining of his bladder is tearing. When it tears it gets stuck in his tube and thats why he has hard time peeing.
Friday he had surgery to change out his catheter. They also had to do some blood work to. After surgery he had to get and iron infusion done. Evans iron was 13 that is really low. It should be 5o or higher. So he got his iron infusion done and he is feeling so much better. We are still waiting for some more of his test result to come back.
When i was up their i got to meet a wonderful family. I didn't get to talk to her that long. But it was so nice to meet her and her wonderful daughter. McKenzie is her daughter and she is 10 she has EB. She is a beautiful girl and a stronger girl. Missy thank you so much for letting me come up there and seeing you and McKenzie.

2011-02-27T16:39:00.000-08:00

2011-02-27T16:23:00.000-08:00

Evan is still having hard time peeing. It has been night mare. I took him to the doctor last Monday to fine out what was in his tube and get his skin look at around his tube. He said he didn't really no what was in his tube, so he had to do a urine culture to make sure he didn't have no infection. So Wed the doctor called me and said he had bacteria infection, they had to call Cincinnati to see what to do. So they said he need an IV antibiotics. So Thursday we went to Roanoke hospital and they started and IV. They check his urine and did some blood work. It showed he had bad infection and his blood work showed that his HMG is 8. So they called Cincinnati and they said not to transfusion him yet. IF he is peeing in his tube for them NOT to change it. They will do it when we go up there next Thursday. So Friday even they said that Evan should go home with an antibiotics. They didn't wont him in the hospital because the flu is so bad there. He don't need that.
So Friday night Evan did okay but he is still hurting. Saturday night he couldn't pee at all. I flushed him out a couple of times and he finally pee. But he has big piece of skin coming into his bag. I just cant believe the skin that's in his bag. He is still having hard time peeing. He is trying so hard to pee he has gas, so i no my little man is hurting really bad. I wish there was something else they can do, it hurts so bad to watch my child pee and he cant and there is nothing that i can do. I HATE EB.

2011-02-18T16:24:00.000-08:00

Evan has been doing okay. His eyes are not getting no better. They are really hurting him. His catheter was doing good until this week. I think there is some skin in there blocking so he cant pee. I have been flushing him out and hope it works. Wednesday night he got sick and vomit, i don't no what was wrong with him. Then he did it again that night in bed. He didn't have no fever or nothing else was wrong.
He hasn't been eating at all. But he is drinking.
It has been nice outside the last couple of days so we have been outside. Evan plays out there about hour and he wont's to come it. He gets to hot and he cant breath. Or he gets tired and comes in and lays down for awhile. I hate EB.
We go back to Cincinnati March 3 to see all the doctors and change out his catheter again.

2011-02-07T05:24:00.000-08:00

Last Thursday Evan had his surgery. His doctor try something different he didn't think this would work. But i told him let try it. So after his surgery his doctor came out and talk to me, he said that he was going to keep Evan for awhile and make sure this works before we go home. So after i talk to the doctor they came out and told me to come to the recovery room. When i did Evan wasn't happy at all. So i told them i said something wrong this isn't Evan. So i rocked him and he looked at me with hurt in his eyes. I told the nurse i said he needs some medicine he is in a lot of pain. So she did, he went back to sleep. Hour went by and Evan hasn't pee. So the nurse called the doctor and told him. He said he needs and X-ray to make sure everything is okay. So two more hours went by Evan still hasn't pee. So finally the X-ray person came and did his x-ray. Then the doctor came back to talk to me he said everything looks good. So i said why hasn't he pee yet. He said he should, so I get him up and get him something to drink. So they said we could go home. I wasn't sure about this something was telling me there is something wrong. So I get everything ready and went to the car. Evan was in so much pain, i said again there is something wrong with him. So we get into Kentucky stop and get gas, and eat. Evan started going crazy he was screaming he was in so much pain. I looked in his bag Evan hasn't pee yet. It has been 4 hrs now. I told him that mommy going to call the doctor. I get the doctor on the phone he said come back. There must be something wrong. So we went back to the hospital and they admitted him. So doctor said he going to see if he can get some urine out, to make he feel little better. So they flushed him and nothing. They took his Catheter out and put another one in. They flushed him again an nothing. So he call the doctor that done his surgery. He said that Evan needs to go the OR now. We had to wait 3 more hours because Evan drank some milk. So finally 5:30 they said bring him in they new he was in a lot of pain. The doctor told me that Evan could get sick and have some problems because he had milk in him. I told him okay. They took Evan to the OR. I was so scared i prayed and prayed that there wasn't nothing bad wrong. The surgery was over and the doctor came out and told me that Evans bladder was full he drain it. He said that the EB was in his bladder. So the skin that's was in his bag. Is the lining of his bladder. He also said he put a bigger catheter in him so now Evan has 16inch Catheter in, he had 12inch. He said he hope this works and the skin can go though the tube. So they kept him there over night to watch I'm. He sleep until the next day he was so tired. So the next day we went home. Evan was so ready to go home.
On the way home Evan was hurting again. But he was peeing so that was good. That night Evan cry and he was still hurting, so Saturday night i called his doctor and told him that Evans was peeing but still in a lot of pain. He said he is having server spasm. He make sure you give him the medicine.
It's Monday and Evan is still hurting when he pees not as bad. I hope this goes away. We go back to Cincinnatia next month.

2011-01-31T17:13:00.000-08:00

I took the kids to the monster trucks and they loved it.

2011-01-31T17:03:00.000-08:00

Evan is still having hard time peeing. So we are going back to Cincinnati Wednesday, he is having surgery on Thursday. They are going to try something else and hope it works. Evan is having alot of skin in his bag. So please pray that it works.

2011-01-16T06:53:00.000-08:00

This year is starting off bad. We all got the flu. Evan is still having problems peeing. So we went to Cincinnati January 13 to change out Evans tube on his catheter. He had to get his airway check. His airway isn't getting no better the ENT doctor said he isn't going to look no more. Unless he gets where he cant breath.
So on the way home from Cincinnati he did good that night he couldn't pee at all. There was no pee in his bag at all. He was just cry he was white as a ghost. He scared me so much that night. I just had to keep on flushing his catheter out and finally after 3hrs he pee a little. I'm calling the doctor this week and telling them that this catheter isn't working. He still have some problems peeing. There has to be something else that they can do.
Evan is doing okay. He cant play to hard because of his breathing he get so choked up when he gets hot. He loves playing with his truck so he plays in the floor alot with his trucks or his blocks.

2010-12-31T09:42:00.000-08:00

CHRISTMAS MORNING

2010-12-31T09:36:00.000-08:00

CHRISTMAS EVE

2010-12-31T09:20:00.000-08:00

I hope everyone had a good Christmas. I no we did. Evan was feeling good. He got up Christmas morning around 6:00, and he went into the living room and seen all the present. He said i wont to open. I told him he had to wait for Chy and Hannah to get up. He went to the steps and yelled at the girls to get up. It was so funny. So they got up and, and they ran into the living room to start opening presents. This was the best Christmas ever. The kids got so much stuff they didn't no what to play with first. I wont to tell everyone thanks so much for everything they did for me and my kids for Christmas.

The next day Evan wasn't feeling good he had bad cough and he just looked bad. So i new he was getting sick. So that was so upsetting. He cant go a week now or he is sick. it sucks. So i took him to the doctor and he had bad cold. Then his eyes starting to act up. So now he has corneal abrasion. I hate them things they aren't no fun.

2010-12-23T09:24:00.000-08:00

MERRY CHRISTMAS

We are so ready for Christmas this year is going to be so much fun with my kids, Evan is going to love Christmas this year. I hope everyone has a good Christmas.

Evan is doing good, he is eat like he has never ate before I love it. He is still having problems with his peeing. They thinks its bladder spasms.

2010-12-16T13:33:00.000-08:00

It has been crazy hear Evan has been sick and everything has happen. On December 8 I had to take Evan to UVA hospital, he couldn't pee. Evan has catheter and he still couldn't pee so i new there was something wrong. It was the catheter had skin in there blocking him to pee. So the next day Evan had surgery to fix the problem, Well thing didn't go the way they was suppose to they had to put a new one in. So they had to cute him again and to it all over again. I felt so bad for Evan. After surgery he wasn't acting right at all he got sick had small fever. So the next day he was okay but not Evan. We got to come home. That night Evan got sick he couldn't stop vomiting. So Saturday he was still sick and he was vomiting and had a fever. Saturday night he was felling better i thought. Saturday after he went to bed he got up he had fever and he started to vomit again. So Sunday i called my mom and told her i was taking him to the ER. I had to get my girls ready for church and then me and Evan went to the ER. They took him to another hospital in Roanoke. We got to Roanoke, they had to check his weight and he had lost 2 pounds, i thought i was going to die. I told them that he had lost some weight. So they check his stools and his blood work. His blood work came back and his blood wasn't good at all. So they called Cincinnati and talk to one of Evans doctor. So they could get better understand with his EB. So they started and IV, and he need to get some nutrition to. They gave him some nutrition. They rest of his test finally came back and Evan had the Rota virus. I said what is that so they told me. So we stay at the hospital for a couple of days. Evan start to feel better he stop the vomiting and no more fever. so on December 14 we got to go home and Evan is doing okay. Evan still not eat, we are trying to keep fluids in him. So tomorrow he has to see his doctor to make sure he don't lose no more weight. So we still need prayer for him.

2010-12-06T13:29:00.000-08:00

Evan had surgery Thursday he did good. I just didn't like what they told me. The inside of his penis was so raw he had skin hang in there. That's why he couldn't pee. So they had to put a Suprapubic Catheter in. So now he has to get use to the bag on his side. Evan is still in some pain where they cute him. Yesterday he couldn't walk or stand. He just cry and cry and you can tell he was in some pain. I told him he needs to go to sleep that he will feel better so i got him to sleep and slept for 4hours. When he got up he was still in pain so i gave him some more pain medicine. That helps some.
Today he is doing better, he is walking and playing. I took him to the doctor to make sure everything was okay. The check his urine to make sure he didn't have no infection. Everything looked good. So i was so glade.
So now everything is going to change i have to watch to make sure he don't pull on the bag. I have to keep the bag on the outside of his paints so it wont tear up his leg. His legs look so good i don't wont to tear them up. His skin looks so good. He still not eating. He just don't care for food now.
We are going back to Cincinnati in Januray to check his airway again and see what they are going to do with the Catheter. So we need prayer for him.

2010-12-01T06:06:00.001-08:00

We are going back to Cincinnati today. Evan is having surgery again on Thursday, they going to see whats going on with his penis. I hope they fix it this time and he has no more problems. They going to keep him over night to keep an eye on him. So we need prayers for him. Thanks.

2010-11-30T05:16:00.000-08:00

2010-11-30T05:06:00.000-08:00

We are having okay week so far. Yesterday me and Evan went to my moms and helped her put up her lights outside. Evan had so much fun. He said i help mommy i help granny i help paw paw. He was so fun and he had so much fun. Then i came home and we did mine. Evan and the girls decorate the tree, it looks so good. Evan loves the tree and the train under it. He lays there and he will watch the train.
Evan is still having a hard time pee. I called the doctor yesterday he said he will talk to some other doctor and call me back. They think he has blockage some where up in there. So why aren't they doing anything is my answer. So I'm going to call them back today hear in a few. My son can keep on like this. So the peeing think is driving me crazy, because i have to watch my son in pain and i hate it.

2010-11-26T11:17:00.001-08:00

I hope everyone had a good Thanksgiving. We had a busy day. We went to my family's an had a good time. Evan was in good mood. I'm so thank full for my kids and family.

Evan is doing okay. He is having hard time peeing still. I have call and talked to Cincinnati they think it still burning him when he pees. He is holding his pee and that's no good. So when Monday morning comes around I'm going to call them again and tell them, he is still hurting to pee. I fell so bad for him, just watch him to pee it so sad. He just screams. Everything else is doing good. His breathing is the same, he still breaths hard when he plays. He cant get over heated or he just has a time. He will get choked up.

Sunday I'm going to take my kids to the mall and spend some time with them. They have a small train at the mall I'm going to let them ride. I hope we all feel okay by then. I have a bad cold and so does Hannah.

2010-11-19T08:13:00.000-08:00

Wednesday morning came i got Evan up and ready to go to the hospital he new there was something going on. So we got to the hospital he was fine at first then he new where he was. Evan was cry and he started shaking. I felt so bad for him. There was nothing i could do he was crying,kicking, hitting me and everything else. So finally we got him some bubbles and some trucks that worked for awhile, then no more. He said mommy go mommy go. He was ready to get out of there. So it was time to go to the OR, I had to hold him down with his blankets around him and they gave him his gas to go to sleep. It was so sad. I gave him a kiss and told him i loved him see him in bit. He was back there for 2hours. Then i got to talk to all the doctors, the ENT doctor said his airway isn't getting no better his vocal cords are swollen he has a lot of blister in there. He is really worried abut him. So we go back January to check his airway, if his breathing gets worse before then we go back up there then. I don't wont to trach Evan until we have to. The urology told me that his penis looks okay they took the stint out. So we are hopping this will keep it open if not, he said there is some other stuff they can try. Then his dental work they took 4 teeth out and cap 4 of his back teeth. They cap them so he will have them to eat with. He got a couple of blister in his month put they took care of them while he was a sleep.
So i got to go see him in the recovery room he was sleep so good. I was check to him to make sure he didn't get no new blister and he did a big one on his arms. So i got my stuff and fixed it while he was still a sleep. So then they took him to his room to get ready for his iron infusion. But the doctor came in and said we have to wait to do his iron infusion, his blood work came back that his HMG was low so we had to see which one they was going to give him. So he got a blood transfusion done. He did really good with it. We stayed at the hospital over night so they could watch him to make sure he was doing okay. Evan did good.

2010-11-15T14:18:00.000-08:00

We are leaving tomorrow to go back to Cincinnati. Evan is having surgery Wed. He is getting the stint taking out of his penis, getting his airway check and dental work done. After surgery he is getting a iron infusion done. So Wed. is going to be a long day. His iron is low again, i guess it will stay like that until he will take his iron medicine. He don't like it and i cant say i don't blame him.
Evan is doing good, he still not eating. So i hope when he gets his teeth fix he might eat.
He is really talking now. I love it. He tells me that he loves me all the time. That keeps a smile on my face all day long.

Evan mommy loves you so much.

2010-11-06T14:02:00.000-07:00

2010-11-06T13:47:00.000-07:00

Big sister giving Evan his breathing treatment.

2010-11-01T17:52:00.000-07:00

I hope everyone had a good Halloween. We did. Evan wouldn't wear his costume but that's okay. I took him out for a little bit he didn't have fun, so we went back to his Granny's and he gave out candy. I didn't get many pictures of him or my girls this year.

Evan is doing better, the peeing thing is alot better. He is having bladder spasms so he is on medication for that. And its working. So we go back to Cincinnati Dec.1 to take the stint out and i hope this will keep his hole open.
He still not eating like he should, but his weight is still good. So that all that matters. He is on the Beneprotein so he is getting his protein.
He is really talking now, he can saw just about anything now. I just love it. He tells me now that its cold outside.
He gets a teacher that comes once a week and he does so good with her. She works with him on his numbers, colors, shapes. I'm so proud of my son. He does so much for all the pain that he is in. I love you so much EVAN.

2010-10-25T17:04:00.000-07:00

EB AWARENESS WEEK OCT. 25 - 31.

We need to fine a cure for this terriable illness. So spread the word out. My son and all of the other EB kids an adults suffer so much.

Evan is doing okay. He is still having problems peeing. So i called the doctor today to get some answers, why is he still hurting to pee. He has a stint in. His doctor is out he wont be back until later this week. We think it just sting him when he has to pee and he knows it and he don't wont to pee. All i wont for Evan is for him to be able to pee with out hurting. I just don't know how he does it. His skin is looking really good. I'm so happy for that. His breathing is still the same he has good days and bad days with his breathing. His teeth are still hurting him. When we go back to Cincinnati I'm getting them to do his dental work. Richmond wont do it until we get his airway check again. I just no that he cant wait no more he needs his teeth fix. They hurt him so bad. I still say that's why he isn't eating, like he should.

He don't like it outside much hear lately why i don't no. i think his eye has something to do with it.

It's almost Holloween i cant wait. Im taking him out this year to get him some candy. he is going to be a little monkey. I hope he will wear it. I will take lost of pictures.

Just remeber EB awareness is this week.

2010-10-17T14:42:00.001-07:00

This has been a crazy week. We left Tuesday to go to Cincinnati Evan woke up with a corneal abrasion. But he slept on the way to Cincinnati. The first day we saw the eye doctor and the ENT doctor. The eye doctor said he had a bad abrasion. The ENT doctor said his vocal cord are swelling. He said he need to go to the OR and get his airway check. So that was schedule for Friday. Then the next day we went to see the EB team. They did some cultures on his wounds. They also looked at his penis, because he has been having problems peeing still. So he said when he goes to the OR, they are going to open him and put a stint in. So Friday comes and his surgery isn't until 3:20. So i new it was going to be a long day. The doctors was running an hour behind. I said OMG. Evan did good he slept alot that day. He went into the OR it took awhile. I talk to all the doctors when they got done. The ENT doctor told me he will need a trach really soon. His airway is getting smaller, so that is so scary. Then the Urology came to talk and he said he put the stint in and cute his the skin more. He said that we need to keep it in as long as we can. So we are hoping when we take it out his hole will stay open. Then they did some blood work to. His blood work came back and his iron is low again. So he will need iron infusione done again.
So any way Evan little boy part is sore. But he was so glade to be home. He has played and played. We are so glade to be home. We was going for 5 days.

2010-10-17T11:03:00.000-07:00

Evan got him a pumpkin

Going on a hay ride.

2010-10-07T07:04:00.000-07:00

Hannah had surgery yesterday she had 6 teeth taking out. She did really good. She is hurting today, she is out of school the rest of the week. So today is going to be a long day, she don't feel good and all she is doing is crying. There is nothing that i can do for. But i do love on her to make her feel a little better. I hate to see my kids in pain.
Evan is doing good. He is getting blister all over him. His diaper area is really bad. I took him to the doctor and they are putting him on some antibiotics. He has a lot of sores with yellow stuff coming out of them. We are going to Cincinnati next week.

2010-09-29T12:33:00.000-07:00

We didn't have to go to Cincinnati after all. The ENT in Roanoke checked his airway. His airway is good, his vocal cords are swollen a little and his larynx are swollen. So the good news is no trach. The trach is the last thing i wont. The hard breathing is because of his vocal cords. He did good when they scoop him. Now we need to get his teeth out, and i think he will be okay.

2010-09-28T15:23:00.000-07:00

Evan has to go to Cininnati tomorrow. Thursday the ENT doctor is going in to look in his airway. Evan is still having some problems with his breathing. They are talking about putting a trach in him. So everyone say prayer for him. I really don't wont the trach, but i guess if its going to help. I will do it.
Evan is doing okay he has wounds that aren't healing. His teeth are still hurting him. We are suppose to have surgery on them Thursday but we have to get his airway check first. So when we get back home the dentist in Richmond will do his teeth.

2010-09-16T18:08:00.000-07:00

I took Evan to Richmond yesterday to meet another dentist. He was wonderful. So we was there all day yesterday, to get Evan ready for surgery. Everyone there was nice. Evan is having surgery on the 30 of this month. They are going to fix his teeth or take them out. They don't know what they are going to do until he is under. He wouldn't set still so they could look in his mouth, and they didn't wont to cause no more blistering or tear of his skin. So he said just wait until he is out. So i cant wait until his teeth are fix. I no he will feel so much better. We was at the hospital all day yesterday and Evan was so good. He was so tired on the way home he sleep and it was a 3hr drive, we came home he played with his sisters. Then i gave him a bath and did his dressing changes. He was back to sleep at 9:oo and sleep all night. I was so glade.

Evan is doing good. He still eats when he wont's to. He is 26 pounds the doctors said that is good. We are going to Cincinnati October the 14 to see all the doctor up there. Evan toes are still hurting him and they still wont heal. I just don't no what to do for him there. He is really talking now. I cant believe he is putting words together i love it. I didn't think he would talk.

So on the 30 everyone say a prayer for him for his surgery that everything goes okay.

2010-09-16T17:52:00.000-07:00

2010-09-11T06:06:00.000-07:00

Today EVAN TURNS 2.

HAPPY BIRTHDAY EVAN.

I can't believe Evan is 2. He has had a rough two years. But he is strong and he is a fighter. We are going to fine a cure for this illness. We are having him a party today at pizza hut. He loves pizza. So we are going to have some Friends and family there.

He is doing pretty good right now. His teeth are still hurting him. We are going to Richmond Wednesday to meet a dentist. Cincinnati wouldn't take his insurance so they helped me fine a dentist in VA. So when we go Wednesday I hope they can fix his teeth soon.

He is eating good right now. So i hope he keeps on eating like he is.

He still has sores that just wont heal. His hips are so bad and his diaper are is so bad. His toes are still not healing.

It is getting cooler outside now. So we can go out and play. But we still cant stay out long because of the bugs are so bad. So we just cant win for nothing. We went to the park the other day and he had so much fun. But all the little kids was just looking at him. They wouldn't stop looking. How do you tell little kids about Evan. They don't understand. But we just kept on playing. Evan was trying to play with some of them but they wouldn't play with him. That was so sad. I hate to see when he gets older what people will say or do. But i know people just don't no about this terrible illness. Evan's face is the worsted on him and i wish it wasn't. But it will be okay.

2010-09-06T05:37:00.000-07:00

2010-09-06T05:20:00.000-07:00

It has been a good week for Evan. I got sick Wednesday vomiting. So Evan went to his grandmas so he wouldn't get it. I'm so glade he didn't get it. I thought i was going to die.

Anyway Saturday we had a little party for Evan for some of my family, because they are going to the beach and wont be hear for his birthday. We had his party at the park. Evan had so much fun he open his presents and had a good time. He favorite toy was his truck. He has every truck you can think of. Then we went over to the ducks he just loved them. Then we went to ride the train. At first he didn't like the train. Then he saw the other little kids there and he did okay. So we got on the train and he loved it. I wish i had some pictures.

Evan finally started to eat, I'm so glade. He still not eating like he should. His teeth are really giving him a hard time. We go to Cincinnati on the 14 to get his 8 teeth fixed. They wont to cap them but i told them no, because it's going to cost me 2thousands dollars. If they take them out it's not going to cost 2thousand dollars. I have to pay for this out of my pocket. I don't understand. So when he gets his teeth fix i hope he will eat.